Symposium to examine genetic technologies' social impact

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A major interdisciplinary conference exploring the impact of new genetic technologies on law, medicine, public health and other sectors of society, co-sponsored by the Whitehead Institute for Biomedical Research, will be held at MIT in April.

"The Human Genome Project: Science, Law, and Social Change in the 21st Century," sponsored by Whitehead and the American Society of Law, Medicine and Ethics (ASLME), will take place April 23-24 in Kresge Auditorium. The conference will bring together hundreds of physicians, lawyers, journalists, consumers, ethicists, scientists and students from around the country.

In four plenary sessions and three sets of concurrent forums, the attendees will explore the information revolution in genetics, privacy and genetic discrimination, the science and ethics of altering genes in individuals and populations, and society's response to the genomics revolution.

"Genetic technologies developed through the 1980s produced a dramatic increase in our ability to unravel the causes of single gene disorders, such as cystic fibrosis and Huntington's disease, but they had relatively little impact on the general population. All of that has changed with the rapid progress of the Human Genome Project," said conference co-chair David Page, MIT professor of biology and a Whitehead member.

"Hardly a day goes by without an article in the popular press announcing the discovery of a new gene," said Dr. Philip Reilly, conference co-chair and executive director of the Shriver Center in Waltham. "New technologies for unraveling complex, multigene disorders will lead to a panoply of predictive tests for common diseases such as cancer, diabetes, and heart disease. Over the next few years, health care providers, lawyers, and others will face a flood of new questions about the interpretation and uses of genetic information."

Among the scheduled plenary speakers are Dr. Eric Lander, director of the Whitehead/MIT Center for Genome Research; Dr. Nancy Wexler, president of the Hereditary Disease Foundation and professor of neuropsychology at Columbia University College of Physicians and Surgeons; Dr. James M. Wilson, director of the Institute for Human Gene Therapy at the University of Pennsylvania; Dr. LeRoy Walters, director of the Kennedy Institute of Ethics at Georgetown University; and Commissioner Howard Koh of the Massachusetts Department of Public Health.

Forum sessions, designed to encourage audience participation, include topics such as "Creation and Use of DNA Data Banks," with attorney Barry Scheck and forensics expert Paul Ferrera; "Medical Records, Privacy and Informed Consent in the Post-Genome World," with Dr. George Annas and attorney Nancy Rice; and "What Are the Limits of Gene Therapy?" with Drs. Robert Weinberg and Glenn Dranoff and law professor Dr. John Robertson.

"This is a critical meeting for scientists," said Dr. Gerald R. Fink, director of the Whitehead Institute. "The rapid convergence of biology and public policy has caught many researchers by surprise. Some states have passed laws that could have adverse effects on biomedical research, in part because legislators did not understand the research process.

"For example, laws designed to ensure informed consent for genetic tests inadvertently have been worded in such a way that they may restrict the development of tissue banks or critical studies of early-onset genetic diseases. Many of these problems could have been avoided by productive communication between legislators and scientists."

SCHOLARSHIPS

Special conference scholarships are available to more than 250 attendees, including students, postdocs and full-time faculty. For more information, contact Gus Cervini at x8-0633 or . The scholarships (including reduction of the student/postdoc rate from $95 to $20) are first-come, first-serve, so call as soon as possible to register. General conference registration is $325 (early registration before March 1 is $275).

The conference is supported in part by the Alfred P. Sloan Foundation; the Institute for Civil Society; the Office of Biological and Environmental Research of the US Department of Energy; and the Ethical, Legal, and Social Implications Research Program of the National Human Genome Research Institute, National Institutes of Health.

A version of this article appeared in MIT Tech Talk on January 28, 1998.